This article by a doctor,
Eating Crow With Lyme, has been making the rounds on several Lyme disease support lists and sites.
A lot of patients are feeling vindicated that longer term treatment with antibiotics is gaining more support when they see a doctor who used to hew tightly to the IDSA Lyme disease treatment guidelines has changed his mind.
What made the difference for the doctor in this article? To quote from the source:
"What changed my mind? Personal experience. A family member began to suffer a wide variety of strange symptoms 12 years ago, including facial numbness, slurred speech, problems with balance, abdominal pain, and headache. After a few baseline studies, her physician informed her that she was depressed and offered antidepressants. She told the physician she had read about Lyme disease and requested testing. He refused, stating (as I had to several of my patients) that her lack of history of tick bite and the classic rash disqualified her from any consideration of Lyme disease. But she worked and lived on a farm, had pets in the house, cut her own firewood, and spent much of her day outdoors. Deer (carriers of the primary Lyme disease vector, the blacklegged deer tick) were as plentiful as cows on the farm. The ingredients were all there...
She changed doctors and her new physician agreed to order an ELISA antibody screening study for Lyme disease. It was negative, she was reassured, and further workup was deferred. But the symptoms persisted, gradually worsening with time. She developed heart rhythm disturbances, migratory joint and muscle aches, and increasing weakness. The Lyme studies were repeated, this time including the Lyme Western Blot. Again, she failed to meet Centers for Disease Control criteria for Lyme disease. Multiple specialists, including neurologists, rheumatologists, and cardiologists, saw her; no one could figure out what was wrong. I kept thinking, “This seems to fit Lyme disease, but the tests are negative ... Hey, what do I know, these guys are specialists; I’d best keep my mouth shut.” Finally she was seen by a Lyme specialist. He initiated aggressive therapy for what he recognized clinically, and what was shown on repeat testing, to be a raging untreated case of Lyme disease. After years of misery and tens of thousands of dollars in medical costs, she is gradually getting better."
This is one doctor's story about one patient, but there are many similar stories that have been told online by other patients.
Based on this, one doctor changed his position on what Lyme disease was about, and now sounds supportive of longer term treatment - at least for someone with this specific background and case.
This is only one short article. I wonder how many other patients this doctor has seen and has wondered if they, too, have been struggling with Lyme disease.
I can't say that long-term antibiotic treatment is the right treatment for all patients in every situation; clearly some people can't tolerate them and their long-term effect on people is not entirely known. They are not risk-free, and they do not work equally well for everyone. At the same time, for patients in which they do work and it helps them get their life back, I have to wonder why there isn't more research being conducted on those who have already improved and reclaimed their former lives - and to compare them in some objectively measurable way against those patients who are acutely infected or have been suffering with long-term symptoms.
I keep thinking back on my own doctors who treated me for multiple ear and sinus infections with multiple courses of antibiotics, and how there was no external scrutiny from their peers or the insurance companies over whether or not my doctors could switch my antibiotics or give me more antibiotics in order to rid myself of such infections... There was no required blood test that I had to take in order to receive more and/or different antibiotic treatment. Objective evidence of infection wasn't necessary; I returned to the doctor and told them I still felt lousy, described my symptoms, and he or she gave me a new prescription.
Lyme disease is treated differently from a sinus infection. Differently from an ear infection. Differently from a urinary tract infection. Different from skin wound infections. All because for some reason, the idea is that Lyme disease has been properly treated after 2-3 weeks of the same antibiotic. In every case. For every person.
But is that correct? The word "guidelines" is supposed to mean
precisely that. If an individual doctor determines a patient needs more treatment, then to provide more is at the doctor's discretion, based on an examination and the patient's response to treatment.
How does one support more treatment in one instance without providing any objective evidence, and deny it in another instance, while requiring objective evidence?
Is the goal for a physician to improve the quality of life for a patient, maintain their quality of life to prevent it from getting worse, or to cure a patient?
Is the goal of a physician - and the role of a physician - at odds with the goal of a clinical researcher and their own role?
